Monthly Archives: December 2014

So here we are on the last day of 2014. What a year, what a roller coaster we’ve been on.

On NYE 2013 Dan and I stayed home and there were many tears , many hugs and despite trying to be optimistic there were moments of despair. As others celebrated and drank and ate their way into the early hours of 2014 we tried to make sense of what 2013 had left as a legacy and we hoped that 2014 would bring us strength to deal with what may be ahead

As many of you know, the first few days of 2014 didn’t offer the promise of better times initially and by Jan 7th Herbie was readmitted to hospital and the bone marrow transplant process really picked up with a sense of urgency. Once again though I remind myself of this not to dwell on the sad times but to put into perspective the place we are in now.

We have had a brilliant Christmas and Herbie has been a ble to enjoy the season like most other 5 year olds in the main. Obviously there are still restrictions on us all which has lead to some family members not being able to come to gatherings due to sniffles etc that they don’t want to pass on and in fact our New Year plans have been altered for this very reason! We are grateful that our families have been thoughtful and accommodating though so that we don’t need to miss out for a second year running.

As well as being so grateful to be in a different place at the end of 2014 from the place that we started we want to say thank you.

Thank you to our amazing children who have been so brilliant this year and put up with so much disruption but kept us focused and in touch with reality when we felt like we were living in another time zone. We love you all so much.

Thank you to our families who have been the most wonderful support to us this year with the age old staples of love and care as well as providing childcare, gifts, food, transport etc etc and just being there. Our mums, dads, brothers, sisters, brothers in law, sisters in law, nieces, nephews, cousins , aunties, uncles…you are all fabulous…we love you…thank you.

Our friends, old, new and virtual…who have supported us, messaged us, been there for us at the hardest times. That text that arrives at just the right moment, the phone call just to say hello, the offer of a quick break and all of the gifts, cards , letters and thoughtful gestures. Without these we wouldn’t have made it through, especially the weeks in transplant. Our friends mean so much to us and we are lucky to have you all x

Work…My school colleagues have made this journey so much easier. They have allowed me to switch off from the worry of career for a while to immerse myself in being a full time care giver and I thank them for that. The stress of it all engulfs you and there is no room to think of anything else. Thank you for being there, for sending messages, gifts and keeping me in the loop. Xx I look forward to getting back into the fold in 2015.

For Dan it’s a different story, he couldn’t give up work as it’s his own business but his wonderful customers have been supportive and flexible and understanding and I know that without the support of everyone and particularly his friends at Prentice he wouldn’t have made it without a serious breakdown so thank you xx

School…I know if you read this blog regularly you will know that the children have been so supported by their schools and Herbie has been made to feel that he is still a major part of his class despite not attending for over a year. Rufus was the proud recipient of a gold Blue Peter badge, the super hero day was amazing and the school raised almost £1.5k for Great Ormond Street. I also include Hospital School here as they have been brilliant, especially the wonderful Victoria and Juliet from Oxford and Helen from GOSH and all of those at The Hub.

With all of the medical intervention this year we obviously need to thank the amazing teams at the JR hospital in Oxford and GOSH in London. Especially the doctors from the ID team & Dr Hull and the staff on Bellhouse Drayson , Tom’s & CDCW in Oxford. Waseem Qasim , Paul Veys , the immunology and BMT teams and Robin Ward in GOSH. You are fabulous!

Finally our amazing Community Nurses, Morag, Sarah, Laura, Ele (and Becky!) who have been part of our daily lives since 2013 and will continue as part of our weekly routine for some time. They have always gone out of their way to provide the best care for us and accommodate us above and beyond the call of duty. You rock!

This week Herbie had his final immunoglobulin infusion for 2014 and started Pamidronate for his bone density issues. We move into 2015 without tears and with optimism. We like this new place! Thank you to those who sent gifts recently and letters. Herbie was thrilled to hear from Hope again and I was touched by the thoughtfulness of the Ezboard mamas.

So Happy New Year to each and everyone of you . I hope it brings you happiness , and health x

I’m here at home , in front of my roaring fire, my four babies are in bed and I’m smiling.

We made it!

This time last year I felt so differently to the way I feel today. As I was wrapping gifts late last night (even with plenty of planning time I was still wrapping at 1am!) I had time to think back to Christmases Past. Much like the Dickens novel, I was taken back to many memories of happy Christmases as a child. I had such a happy childhood and my Christmas memories are all brilliant. I remember singing carols in bed on Christmas Eve , letting my daddy creep down to be sure that Father Christmas had been before we went down to rip open the paper and reveal the very things we had been dreaming of. Then when I was older there were wonderful times on Christmas Eve with my friends in the pub. Then there was my first pregnancy Christmas with the arrival of our twins, Lily & Kitty, bang on 40 weeks two days after Christmas Day and the arrival 5 days before Christmas in 2007 of Rufus. So many happy times but also , as with all people, there are some more difficult memories. The loss of my grandad a few days before Christmas, those first Christmases with key family members missing, the Christmases when we had to cut the day short due to illness. These memories are ones I would rather not recall and one of these memories is Christmas 2013.

Christmas Day 2013 started with calpol for Herbie to bring down his fever and although he tried to show some interest in his sack gifts and stocking goodies he was clearly not well and excitement was hard to muster. Presents were opened but left as he climbed back onto the sofa and watched his siblings excitement. Our only visitor on Christmas Day 2013 was Allie, a community nurse , who came to administer his iv antibiotics via his newly inserted PICC line. We waited until she had finished, by then Herbie was asleep, and we were able to go to my parents for Christmas dinner. Ibuprofen helped him to make it through another round of present opening there but he struggled again to find the enthusiasm to actually play with the toys or his siblings/cousins and he wasn’t hungry or remotely sociable. He got hot and needed meds, slept and complained his tummy hurt. We went home early feeling sad and robbed of a happy family Christmas that we had looked forward to after the year of worries over Lily’s health.

Fast forward to today, a year on, 7 months post bone marrow transplant. Our day was all we had hoped for . Last night the four children were so excited , just as they should be, with the anticipation of Father Christmas visiting. Dan took three of the children to the local Christingle service and then to the pub whilst Herbie and I stayed home watching a Christmas film and then wrapped some gifts. We were so excited.

Christmas excitementOur Christmas Eve box left by our elf

We read Christmas stories, drank hot chocolate and watched a Christmas film before bed. Around 7.45-am this morning we all ran downstairs and opened the door to shouts of “he’s been, he’s been! From then on we had a text book day! Smiles, unwrapping, excitement, food and fun with cousins, siblings etc. Obviously there were the usual daily medicines but we had a normal day! No community nurse visits, no calpol and plenty of smiles and happy memories made. We had the Christmas Day, and indeed the run up to Christmas, that we had all hoped for. We hope that you did too! We know that life is by no means back to normal but do you know what? It sure felt pretty normal today!

I did stop and think of those people that we have befriended during transplant a few times today. I knew that not everybody was having the day we were having. Our friends who are still in GOS with their son, 8 months post transplant , who haven’t had their going home post transplant moment yet. Our friends whose 3 year old daughter was readmitted a couple of weeks ago with post transplant complications. (Although we later heard GOS had let her home for 9 hours to be with family). Our friends whose 11 year old son was taken into his local hospital two days ago with a fever and had a line infection confirmed and required hospital iv’s today. Our friends who are spending their first Christmas without their son. Our thoughts are with them.

Not everyone will be making a memory that they want to treasure today but I am grateful that we had the chance to do that this year. So far Christmas 2014 is magical and gives me hope that 2015 and beyond could be too.

Where do I start? Probably with an apology. It’s been some time since my last blog post and I know that some of you that are not on Facebook or that don’t see me daily will be wondering what has been happening. Well I’m pleased to report that things have been going well and I have quite a lot to report!

After the hospital admission in November we had a speedy recovery. Within a day of being home Rufus and other friends and family came down with the same symptoms confirming that Herbie had indeed just had a virus. I chatted with our GOSH immunology nurse who reminded me that he was only hospitalised as he has a Hickman line. The Hickman Line must remain free of infection and any fever could potentially be a line infection.

As the days went by we all got back into routine. At the start of December there was much excitement as our North Pole elf returned to spend the month with us. Last year he helped Herbie get through some tough times.

Christmas 2013 with Claus McJingle

Everyone was pleased to see that he had returned as it heralds the run up to Christmas has started.

Dan and I were excited but cautious…we know how quickly situations can change so we vowed to continue to take each day at a time And enjoy it. This was kicked off by a lovely ‘tea’ at the Randolph Hotel and a little Christmas shopping in Oxford courtesy of the lovely Lynsey and Archie. They had given us the voucher back in the summer whilst we were in GOSH and it was great to finally get the breathing space to use it. We had a lovely afternoon.

On the Wednesday we had a big day of appointments at GOSH. You may recall that our GOSH consultant agreed to bring the scans forward a few weeks in order to see if the iv Micafungin was still required. Community nurses were due to us for 8am to do the dose prior to heading to London but when we didn’t have anyone knocking at our door by 8.30am (which was very very unusual) we knew something was up and that we would have to go to London without the iv and have it later. I started to worry that the day wasn’t going to plan, it felt like a less than positive start to this important day but the journey to London was easy and we began to relax.

London looked festive. Herbie enjoyed the tree and lights in Brunswick Square and we reminisced about our time in transplant and the warm summer days spent walking there. What a contrast.

We arrived in time to get our scans , Herbie had the usual obs and all were good (his weight continues to increase… those steroids!!)

First he had the CT scan. We’ve really had too many of these this year, in fact we were told no more for a year back in June but hey ho!

Herbie took it all his in stride. The scan was over quickly and then we raced up to see Waseem who confirmed that if the scan looked the same or improved the iv would stop but that he couldn’t let us know until the following week after the reports were in.

We then had a dexa scan to check bone density (long term steroid use effects this) and a lung function test. The lung function test results were fed back immediately…best yet! We were thrilled as he’s in the 90%+ range.

A quick visit to the Lagoon to grab food and we bumped into Holly, one of our lovely Robin Ward nurses from transplant. We were so pleased to see her. Herbie had a quick look at the Christmas display and we wrote a message for those still in hospital and posted it.

Then it was time to head home. I felt that the next few days would be so tricky as we waited for news from the CT. We prepared ourselves for Waseem to say that we needed to continue with the iv. It may not seem such a big deal but if the iv could stop that meant no more daily community nurse visits and this meant more freedom and also we wouldn’t have a repeat of last Christmas which was dominated by illness and nurse visits.

The following day I noticed a missed call from Ele, one of our community nurses. I called her back and she asked if I had heard the news? I hadn’t ! The scans were much improved and the iv was stopped! I was so so happy and Herbie punched the air and shouted YES! when Ele told him. Almost a year since the iv’s began he was finally finished with them. It was music to my ears. We went straight out, because we could!

The following day we had a call from GOSH to confirm that we had heard the news and to give more info on the scans. The CT showed overall improvements which was great but then we were advised that the DEXA scan had shown that his spine was a little fragile from long term steroid use and that he would need some iv therapy for that. I was shocked as I think the DEXA scan was the one I literally hadn’t worried about! We hoped that it would be arranged so that we could administer at the JR rather than GOSH as the loading dose was to be given over three consecutive days.

Thankfully there wasn’t time to dwell on it as Herbie had an important job to do. He was playing Angel Gabriel in the school Nativity. Last year he missed his first Nativity as he was so unwell. This year his teachers had discussed with me early on that they would like him to be Angel Gabriel by Skype if he was unable to be there. Waseem had told us that he could take part it in if all was ok at school and so we went ahead. Herbie loved everything about it, being reunited with classmates, dressing up, being on stage and all of the whoops and cheers he was given. “This is the best thing that has happened to me all year ” he said.

It was emotional watching him on the stage, beaming from ear to ear , speaking his lines so clearly and faultlessly. We couldn’t have been prouder.

Herbie actually made the Nativity this year

Today we had our annual family Secret Santa party. This was again a time for reflection as last year we knew that the following day Herbie was to have a lung biopsy. He was due to spend three days in hospital but ended up being in almost until Christmas Day. He also spiked a temperature at last years party and needed to go home. This year he had a ball , dressed as Olaf the snowman (his secret Santa gift) we were able to see our boy and his siblings and cousins start their Christmas countdown.

So I will sign off now with 10 days until Christmas and 2 days until Herbie is 7 months post transplant.

I will post again hopefully before the big day. Fingers crossed that the news continues to stay positive. We are now totally off MMF and the steroids are being weaned to (6mls twice daily) . His bloods, although hit rather hard after the virus a few weeks back, are recovering